The Expansion of the Eating Disorders Community & Advocacy Efforts: Can we see and conquer the divide?

Social advocacy began to establish strong roots in the United States during the early 20th century with a focus on the rights of workers in the new industrial complex and eventually women’s suffrage. These important issues were a part of a new tradition of community that emerged to challenge and change the path of policies and beliefs that contributed to human suffering throughout the next 100 years and beyond.

The 1960’s and 70’s saw a great increase in this type of social advocacy and change. It was a period in which the status quo was challenged and direct action like marches and sit-ins were common-place. Many great movements began during this time period including civil, disability, women’s, gay, and environmental rights.

In this great tradition, a swell of patient advocacy groups formed in the late 1970’s and 80’s to insist on research funding, resources for treatment, and partnerships with the medical community. These groups were often founded by lay people who used their collective voices to insist that patients have rights and the patient experience must be considered in healthcare policies, treatment protocols, and access-to-quality-care.

The patient-centered care model emerged as a result and sought to understand the interpersonal needs of patient as well as the disease state being addressed by healthcare providers. By the 1990’s another movement, cultural competency, further sought to address the disparities in health amongst racial, ethnic, and other groups. Both have emerged to serve as a roadmap to best practices in producing quality and equality in both the medical and mental health settings.

The eating disorders advocacy community emerged during this time of increased social activism in 1976 when Vivian Hanson Meehan began the first non-profit organization dedicated to providing support via a hotline and referral service for those with Anorexia. Vivian was told by experts at the time that Anorexia was extremely rare and discouraged her from looking for others on behalf of a family member who was suffering. Thankfully, she did not take the experts’ advice and began her journey by placing an ad in a local paper. Vivian received 8 letters in a very short time from people in her community who were also suffering and tens of thousands more followed in the years to come. Vivian knew that the problem was beyond what the experts understood and dedicated her life to supporting those with eating disorders through the Association of Anorexia Nervosa & Associated Disorders (ANAD), which continues its work today through a second generation of leadership.

When I first engaged the eating disorders advocacy community in 1999, I was excited to use the skills I acquired through my work on political campaigns, in the pharmaceutical industry, and the non-profit sector. I grew up around people who worked on social justice issues and had a deep sense of duty to others via social and political means.

The reception I encountered was not what I expected and I struggled during meetings and conferences to understand how I fit in to the community. I was told I had an eating disorder several years prior and had several years of treatment under my belt, but I did not look like anyone I knew with an eating disorder because I lived in a higher weight body. After several attempts to become involved in the advocacy community, I decided that it was probably best if I did not participate because clearly I had something wrong – I must have misunderstood what an eating disorder meant for me versus someone with Anorexia or Bulimia. I did not want to embarrass myself amongst the people involved in the research, treatment, and advocacy of the community by not being “right” for the community. I would need to look elsewhere for support and a place to put my energies, but deep down knew that there really was not another place for me.

Thankfully, the research and understanding of eating disorders continued to evolve and in 2008, after much more treatment and in strong recovery, I decided to reengage with the advocacy community. It was clear that what some clinicians had known for years was finally validated through research – the size of the body is not a determining factor for an eating disorder and in fact the least recognized and understood, Binge Eating Disorder, was the most common and affected people of every size and shape imaginable.

When I founded BEDA in 2008, almost a decade since my initial attempted to be a part of the eating disorders advocacy community, science finally provided the evidence I needed to believe I had a right to contribute my voice and experience. The year before, James Hudson and his colleagues at Harvard published an epidemiological study showing that BED was the most common eating disorder and other studies were clear that BED had clinical utility, or in other words it could be treated in a clinical setting. This was a critical step forward toward inclusion as a formal diagnosis in the DSM-5. It was a liberating time and gave me the confidence to begin my advocacy work despite the knowledge it would be a hard road ahead as is the case with any issue. I found out quickly that I was right, but surprisingly not in the ways I anticipated.

I suspected that other advocacy organizations would not be welcoming to BEDA, but was thrilled to discover I was wrong. Every leader of every eating disorder organization was welcoming and supportive. Each acknowledged that their organizations had little experience with BED and they were eager to learn more knowing that the APA was considering adding an official BED designation to the next edition of the DSM. I worried that I would have difficulty finding experts, clinician advocates, and others for BEDA’s board of directors and scientific advisory committee. Here too, I was wrong. Many people wanted to lend their time and expertise, and I quickly brought together a group of passionate and thoughtful individuals who believed in the organization and its mission.

In those early days, I had no idea that the difficulties I would encounter would not be as a result of a lack of passion or partnerships, but rather a fundamental issue within the eating disorders community that was rarely discussed: the weight biases of those who work in the community and/or suffer(ed) from an eating disorder.

I recall a conversation early on with a lovely woman who worked for a treatment center and once shared with me that she would never “…hire an even slightly overweight outreach representative for fear that many of the clinicians we count on for referrals would never again send us a client.” I was surprised by this and sure that she was wrong – this is the eating disorders community after all – how could anyone treating these disorders not be open to the fact that people come in all shapes and sizes?

I dismissed this as random and surely not the point-of-view of most people doing this work. It did not take me long to understand that I was naïve and would experience the biases myself over and over again.

In fact, as the years went by and BEDA became a more recognized entity, I began to hear rumors from inside the community that my own recovery was in question because I continued to live in a higher weight body. I also began to hear that I was not taken seriously at times because I was out-spoken about my concerns around the treatment of people with BED using behavioral weight loss despite no evidence that it could result in and maintain recovery.

I began to notice that this community had not escaped or worked to reject the common pitfalls of the weight biases that are fostered in families, professional communities, and the general public. In fact, I came to believe that it may actually be a community that has internalized these messages to a greater extent than even the general public given the nature of these disorders.

It became more and more clear with each passing year why I felt like I was beating my head against a brick wall when it came to getting the messages out about BED and the importance of acceptance around body size and shape for recovery: the often espoused “body love” or “body acceptance” that was a part of the eating disorders recovery narrative was, in fact, exclusive. From the lack of body diversity in eating disorders visuals to the Dove project (which includes many incredible eating disorders advocates who did their best to influence a wider range of diversity), to the higher weight clinicians who were regularly accused of being ill or not taken seriously based on their size, it was clear that the representation of who deserves acceptance in this community was and continues to be very narrow.

As an example, I’d like to share a story and ask you to consider your own assumptions around this person and her decisions. I’ll call my friend Susan – this is not her real name, but I do have her permission to recount her story.

Susan recently lost a very important person in her life to Cancer. This event coupled with a highly stressful time in her professional career put Susan in a vulnerable place emotionally and jeopardized her years of recovery from an eating disorder. She was irritable, short-tempered, sad, and all over the place with regard to her mood – something she had not experienced in many years. Frankly, she was a self-described monster and unfortunately others in her life bore the brunt of her depression and grief.

Susan shared with me that this was a moment in time that was highly traumatic because of the type of relationship she had with her friend. Despite having a wonderful and supportive husband and an excellent support system of family and friends, she felt lost and on unstable ground for the first time in many years. She told me that she “…could hear the faint cries of my eating disorder luring me to its comfortable arms, and over a short time, the cries became louder and louder.”

Susan was restricting and shared that she knew bingeing and compensation (more restriction) was right around the corner. She was beginning to body check in the mirror and could only focus on everything about her body that is “wrong” in her eyes. She did not want to go out because she was sure that people would think she gained weight and wanted to isolate. Susan began to question the decision she made years ago in her pursuit of recovery to not pursue weight loss and instead focus on health and everything she could do to give her body what it needs in the way of nourishment, movement, and respect. She began to think about what it would be like to live in a smaller body and quickly began obsessing about how many calories she was avoiding through this new opportunity for restriction brought on by depression.

Fortunately, Susan recognized the signs quickly, told her husband, her mother, and a couple of friends that she had no desire to eat, was beginning to enjoy the empty feeling that came from lack of food, and was even considering beginning a running regimen on her treadmill – a form of movement she despises. She knew from past experiences that this regimen would help her lose a couple of pounds quickly so that she could feel lighter and this would motivate her to keep going.

Fortunately, she also knew she was on a slippery slope, but told herself that she will be okay if she used the tools she had and that this bump in the road is normal and expected in her most difficult times given her history.

Susan knew she needed consistent nourishment and bought several packs of Ensure to have an easy way to keep her stable and strong during this time that her body and mind was rejecting food. She set an alarm to remind her that, at minimum, she needed to have 3-4 of the Ensure supplements daily. It was a chore and she was not happy about it, but knew that a binge would be at the end of the restriction if she did not nourish herself adequately and ask for help from those around her.

After several weeks Susan also decided, as a precaution, to seek some help from an eating disorders specialist because her depression was not lifting and she knew that she was at increasing risk for a more permanent relapse.

Would you be surprised to know that Susan has lived in a larger body her entire life even during her eating disorder and beyond? What would you recommend for her if you are an eating disorder clinician and she showed up in your office? This is what happened when Susan went to a new therapist in her town that was trained as an eating disorders therapist at an esteemed university.

Susan liked her new therapist, connected with her easily, and explained her situation during the initial assessment. She told the therapist that she was recovered and that this was a small relapse that she wanted to make sure did not evolve in to a full blown and extended relapse so she was seeking help as early as possible.

Susan went on to tell the therapist that she was diagnosed in the past with BED and that she has been stable for over 10 years and engaged in a focus on health rather than weight that has provided her with a way to enjoy life, movement, and food without the compulsions that kept her from recovery in the past. She talked about her desire to work through her grief and depression, and find her way through the feelings she was having around restriction brought on by depression so that she would not move on to bingeing as she had in the past.

The therapist spent several sessions with Susan working on these exact issues and things seemed to be progressing nicely. Susan was beginning to feel better and restricting less. She avoided binge episodes and felt good about how things were progressing until a session when the therapist suggested that since Susan was beginning to feel better, perhaps they could begin discussing how she could approach “the final steps her recovery” and address her “unhealthy weight.”

Susan was floored and asked the therapist if she truly believed that given her history and what restriction means for her that she could honestly engage in a purposeful pursuit of weight loss that would not put her back in to a compulsive and anxiety-ridden state. The therapist talked about studies with BED clients and behavioral weight loss, mentioning also that she would be a candidate for bariatric surgery. She clearly did not agree with Susan’s approach and what worked for her thus far, which was a blow to Susan and everything she had come to believe and trust.

Susan left the office feeling betrayed. She liked this therapist as a person and up until this point trusted her. She also knew she had been down this path many times before. She knew that there was little acceptance by the medical and mental health communities around the fact that some bodies are going to be larger and that pursing weight loss actually triggers cycles that are ultimately more dangerous and lead to higher weights.

Thankfully, Susan had a community of people to turn to and sought out another clinician who helped her get back to a place where she once again enjoyed life and did not need her eating disorder. She resumed providing her body with enough nutrition and reengaged with activities she enjoyed and felt good to her body including swimming, horseback riding, and a walking club with girlfriends. Her depression subsided and her mood stabilized. She is back to dealing with her body in a way that cherishes it and gives it everything it needs. She is in a great place and an inspiration for me and others.

Susan’s story is an example of the different ideas within the eating disorders community around what recovery is, who deserves to accept and love their bodies, and why our treatment paradigms are at times disjointed and unsafe for some people.

As an advocate for those with BED, I believe it is extremely important to be honest and vulnerable. I have told my story hundreds of times and share my innermost demons and shortcomings. I also believe that I have a duty to stand up for what many of us who have been down this road know and encourage us to rethink what the patient-centered approach for BED looks like given the diversity of body sizes, mental health issues, and biases that are all a part of what each individual brings to the table.

Within our field and beyond, I now believe that a core problem to address is the breakdown of the patient-centered system when a person who lives in a higher weight body is concerned. Conversations between physicians, therapists, and patients are damaged because of the shame, guilt, and lack of tolerance for people of size. The system has a built in bias that inherently causes harm because it assumes a moral judgment about patients. It is an extension of the bias seen in the greater society around larger bodies and it is a major environmental trigger for all types of eating disorders.

Ask anyone who has or had an eating disorder about being teased and/or bullied about their weight, how they looked, or the messages they received from family, friends, or physicians about body size. Whether it is a teen boy with Anorexia, a grandmother with Bulimia, or a 30 something professional with Binge Eating Disorder, a story of fear will emerge. Fear of being different, fear of not being accepted or loved, and ultimately a fear of living in a higher weight body because of the messages they were given along the way about themselves and their body.

An example:

A young woman in recovery from Anorexia shared with me that she remembers the exact day when she decided to stop eating. She was an avid softball player and hit a ball far in to left field. She was rounding 3rd base and heading for home plate when a bunch of boys in the bleachers began calling her “elephant girl” and were making sounds that one would think of when a large animal walks. This young woman was an athlete with a healthy body, but this bullying made her question everything she thought about herself and she decided to begin dieting in earnest. She feared that she was not okay and would become fat in the future with no opportunities for relationships or love. This was a powerful reason to change for her and unfortunately she was primed for an eating disorder that would take the next 10 years of her life and rob her of many wonderful experiences.

Weight stigma directly impacts everyone, not just higher weight individuals. It is the subtle messages and the small comments that come from parents, healthcare providers, therapists, teachers, peers, mentors, and on and on. It is the constant barrage of information presented in a way that slowly erodes our trust of our bodies and urges us to look to others for acceptance.

We have come to an important crossroad in the eating disorders community, which should really force all of us who are advocates, clinicians, researchers, and sufferers to pause and take stock. The formal addition of those with BED has added a wrinkle to the overall feel of the community and in some ways it has heightened differences of opinion around weight and health because weight biases are engrained in all of us, which is creating rifts between those who are willing to acknowledge it and those who are not.

In a recent study done by Rebecca Puhl, PhD from the RUDD Center for Food Policy & Obesity at Yale, mental health clinicians who work in the eating disorders field were asked about their attitudes toward people of higher weights. For me and others who have experienced weight stigma directly from an eating disorders provider the outcomes were not surprising. For others this study serves as a mirror that is necessary if we as a community are going to do a better job embracing this aspect of individuals with eating disorders and be a part of the solution rather than the problem.

Similar to other health disciplines, eating disorder providers are not immune to weight bias. This has important implications for provision of clinical treatment of obese individuals and efforts to reduce weight bias in the eating disorders field.

For more information on the study, please watch this interview I did with Dr. Puhl during BEDA’s 2013 Weight Stigma Awareness Week.

We must make the issue of weight stigma a primary part of every eating disorders campaign and educational event. We must educate advocates, clinicians, researchers, teachers, parents, policy-makers, and others about the harm this pervasive threat to our health and well-being causes. We must no longer ignore that eating disorders come in every shape and size and that the very thing that drives one person to stop eating, compulsively exercise, or purge regularly can also drive others to binge excessively and stop moving.

We are all in this boat together and in the tradition of the great social justice leaders before us, we must look at the difficult aspects of our issues, embrace our own internalization of the beliefs and behaviors that fuel the issues and injustices, and lead the way toward change.

This is not a matter of “justifying fatness” or “denying there is a problem.” This is a matter of allowing people to find their paths to well-being free of judgment and shame. It is a matter of human dignity and I encourage you to take a step back, think about what you believe about higher weight individuals and challenge these beliefs. Think about your words and how much power they hold. Think about how you have internalized the beliefs and possibly harmed yourself or others as a result. Think about what these internalized messages mean for your clients, your families, your peers, and others.

In the great tradition of social advocacy we must name the problem, discuss the solutions, and lead by example. We must acknowledge that weight stigma creates a disparity leading to discrimination, lack of treatment, mental health issues, and poorer health outcomes in the medical and mental health settings. This is in stark contrast to the intentions of the patient-centered and culturally competent models that are intended as a roadmap to quality and equality in healthcare.

It’s time to honor the social activists who came before us in the field of eating disorders by evolving and becoming united around this issue of weight stigma and the role it plays in our work. We must do this work on behalf of those who suffer and in the great hope of prevention. Let’s join our voices and become an example for other provider and advocacy communities by naming our own biases and educating others how to avoid the weight stigma traps that lead to internalization of harmful beliefs and poorer health outcomes.

Bio –Chevese TurnerFounder, President and Chief Executive Officer

Recognizing the need for an organization to advocate on behalf of affected individuals and the providers who treat them, Chevese Turner founded the Binge Eating Disorder Association (BEDA) in June 2008. A well-rounded career in the non-profit healthcare sector, pharmaceutical industry, and on political campaigns performing a variety of leadership roles including advocacy, education development, marketing, and government affairs prepared Turner to serve this under recognized population through social action, education, and outreach.

Turner has in-depth knowledge of health care policy development and organizational advocacy which she utilizes in BEDA’s efforts to increase access to quality-care for those with BED. Over the past 5 years she monumentally increased the recognition of binge eating disorder as a distinct condition and insisted that it no longer be relegated to a footnote in the eating disorders field. She is recognized as a leading voice on the continuing need for increased BED recognition, research and advocacy across many stakeholder communities and was instrumental in bringing the topic of weight stigma to the forefront through BEDA’s annual National Weight Stigma Awareness Week to draw attention to the stigmatization of individuals living at higher weights and the important role this can play in the development and/or maintenance of eating disorders.

Turner is passionate about and dedicated to the BED community, having struggled with the disorder for many years prior to finding treatment and recovery. She is steadfast in her journey to bring the disorder and the need for specialized treatment in to the light for those who suffer in silence. She is a regular speaker about her own journey and issues related to advocacy work around binge eating disorder and weight concerns, bias, discrimination, and bullying.

Turner attended Temple University in Philadelphia where she received a BA in Political Science. She is a past Committee Woman to the City of Philadelphia’s 21st Ward and cannot imagine engaging in a profession that is not related to working to better the human condition. Turner lives outside of Washington, DC with her husband and two sons, and is an avid Yankees fan.